Jenny Woolsey's blog, with posts about living with Crouzon syndrome and Down syndrome. Fresh, real and raw.

Friday, 17 November 2017

Blog 102 - I am not a Wonder Adult but I do have a Craniofacial syndrome

There is a lot of talk around at the moment about the movie, Wonder, based on the book of the same name, written by RJ Palacio.

I will not call myself a Wonder adult, or my two children, Wonder kids. Myself and my two children do have craniofacial syndromes. We have experienced some similar situations to Auggie in the book and movie. We have all experienced teasing and bullying about the way we look. We've all had multiple operations. But we are real flesh and blood, not a fictitious character.

So I thought I'd give a brief slideshow of my face from birth to nineteen years of age. Most people do not know I was born with a different face, thanks to extraordinary pioneer facial surgery. But during those precious young years when you form your self-identity and society tells you what it thinks of you, and it rates you as being valuable or not, I was different. To many I wasn't worthy, but fortunately to my family and to others who saw beyond my face, I was loved and valued. The rejection by some, particularly boys, left its psychological and emotional scars on me. I struggled internally, but wore a smile on my face and enjoyed life as much as I could. Inside of me I bore an intense determination to show the world that I was more than how I looked. This ambition would stand me in good stead for the rest of my life. I would never let adversities turn me into a negative or spiteful person.

This is me as a baby. My skull is fully fused and not growing. I was eleven months old when I had my first and second surgeries to expand my skull so my brain could grow.

Toddler

This photo was taken at a puppet show. The photographer refused to take my picture, then with my mother's insistence he did, but he did not arrange the three of us like he did with the other children who were there.

Kindy

Eight or Nine

At the age of nine - I turned ten in hospital, I had my first major full facial reconstruction. This picture is soon afterwards as I am still wearing my wig.

Twelve

As my face continued to grow and change it regressed. My lower jaw became quite protruded and my eyes grew bulgier. This caused me a great deal of distress.

About fifteen

Eighteen (my debutante ball)

A couple of months after my eighteenth birthday I had my final surgery. This was me recovering from it:

This photo was taken on my nineteenth birthday when I was at university studying to be a teacher:

I went on with my life, trying to completely forget that I was born with Crouzon syndrome. It was only when I gave birth to my first child, who also had Crouzons, that it all hit me in the face... but that is another story.